A Roadmap For Quality Dementia Care
A roadmapfor qualitydementiacareParliamentary Friendsof Dementia paper16 March 2021
IntroductionDementia Australia has a clear roadmap for quality dementia care.It is based on the views of people living with dementia, families andcarers and addresses the gaps and possible solutions outlined in theRoyal Commission into Aged Care Quality and Safety. Not only this,but the roadmap addresses the systemic failings in an aged caresystem in which dementia has not been core business.The Government’s response to the Royal Commission’s findings is arare opportunity to make a step-change difference to the experienceof people impacted by dementia.To that end, Dementia Australia has been working with people livingwith dementia, their families and carers, as well as some importantsector partners, to develop an integrated “Roadmap for QualityDementia Care.” This collaborative vision, together with its keycomponents, has been presented for careful consideration bythe Government. .In 2021, the estimatednumber of Australiansliving with dementia isWithout a medical breakthrough,by 2058 the number of people withdementia is expected to increase to472,0001,076,000In 2021, the estimatednumber of people withyounger onset dementia isBy 2058 this isexpected to rise to28,30041,250Reference: Dementia Australia (2018). Dementia prevalence data 2018-2058,commissioned research undertaken by NATSEM, University Canberra.March 20213
Dementia is not core businessin aged care settings.Pathwaysand access toinformation,support, diagnosisand services iscomplex andnot timely.The quality standardsframework does notadequately capturedementia.People living withdementia and theircarers are not atthe centre of (andenabled participationin) service planning,delivery, feedbackand evaluation.Outcomes for people livingwith dementia are notmeasured or used to informcontinuous improvement.The workforce lacks an understanding ofdementia and the knowledge and skillsneeded to deliver quality dementia care.There is a lack of meaningfulactivities and dementiafriendly environments forpeople living with dementia.Figure 1: The most significant system issues as identified by people living with dementiaThe Royal Commission has brought focus to key themes for the agedcare sector to better meet the needs of people living with dementia,their families and carers, including dementia support pathways;specialist dementia care services; workforce education; anddementia-friendly design of aged care accommodation.Dementia Australia offers a roadmap for quality dementiacare to translate these themes into practice.4A roadmap for quality dementia care
Our vision for significantlyimproving the experiences ofpeople living with dementia,their families and carersQuality dementia care needs to become an intrinsic, core elementof aged care in Australia. Dementia Australia believes that thereare three key areas of transformation that collectively would makea substantial difference to the delivery of quality dementia care forpeople impacted by dementia: Dementia support pathways Building workforce capability Dementia-friendly designWe see these three focus areas, along with a set of underpinningprinciples such as integration, continuous improvement and ongoingconsumer engagement, as combining to form a ‘roadmap’ for thefuture of dementia care and supports in Australia. We also recognisethe power of effective partnerships and acknowledge the importantrole of Dementia Training Australia and Dementia Support Australia inbringing these initiatives to life.The roadmap presents a connected, integrated dementia caresystem, where people living with dementia, their families and carers,and their care providers can access the information that they needand be supported to navigate the most appropriate services. Inconjunction with this, the sector, and people working within it, willhave the capacity and capability to consistently deliver quality carefor people living with dementia, their families and carers, and thephysical settings within which people receive care will also be fitfor purpose.March 20215
There is ongoing consumerengagement and consultation.People living with dementia,their families and carers areat the centre.Research andevidence isused to informdecision-making.Organisationshave a cultureof continuousimprovement.Single dementiaaccess point.Consumers are connected to information, services and supportsthat are appropriate, available, accessible and integrated.The workforce isskilled, capable andfocused on peopleliving with dementia.Built environmentsare fit-for-purpose.Focus areas1Dementiasupportpathways.2Figure 2: Quality Dementia Care Roadmap6A roadmap for quality dementia esign.
Focus area oneDementia support pathwaysDementia Australia proposes an integrated and specialist serviceresponse with a single access point through a centralised, nationaltelephone and online service that complements My Aged Care, theCarers Gateway and the National Disability Insurance Scheme. Byexpanding on the existing National Dementia Helpline, DementiaAustralia will offer a more comprehensive and integrated servicepathway that includes the kind of service, social and psychologicalsupport that people need. This will ensure people of any ageexperiencing symptoms of dementia, living with dementia, and theircarers and families have timely access to diagnosis and a direct andclear pathway to early and ongoing supports and treatment services. 18.7billion2025By 2025 the total costof dementia is predictedto increase to more than 18.7 billion in today’sdollars, and by 2056, tomore than 36.8 billion. 36.8billion2056Reference: The National Centre for Social and Economic Modelling NATSEM (2016) Economic Cost of Dementia inAustralia 2016–2056.March 20217
Focus area twoBuilding workforce capabilityDementia Australia proposes a comprehensive approach to buildingthe dementia capability of the aged care workforce to ensurethe skills and knowledge to provide quality care and support topeople living with dementia. This will focus on addressing the mostimmediate deficits in workforce capacity, along with implementinginitiatives to support the sustainable transformation of dementiapractice in the longer term. The education and training initiativeswill address the needs of different vocational groups within andoutside aged care settings and target both the current and thefuture workforce.Dementia educationis considered themost needed trainingby both home care workforceand service providers.Reference: National Institute of Labour Studies (2017) The Aged Care Workforce, March 2016.March 20219
Together with Dementia Training Australia and DementiaSupport Australia, we have identified two phases which would beimplemented in parallel to address education and training needsand build the workforce dementia capability.1.Uplift dementia capability of the workforce in the short-term.2.Implement initiatives supporting in the sustainabletransformation of dementia practice in the medium to long term.68.1%80%More than two thirds ofaged care residents havemoderate to severe cognitiveimpairment. 80% of aged care residentswith dementia require highlevel care.This is almost double the amount of residentswithout dementia who have high care needs (80%).Reference: National Institute of Labour Studies (2017) The Aged Care Workforce, March 2016.10A roadmap for quality dementia care
Focus area threeDementia-friendly designDementia Australia proposes developing and embedding a set ofrobust, evidence-based and practice-informed dementia-friendlystandards. This will enable physical environments that support peopleliving with dementia to be as independent as possible. Recognisingthat it is difficult and likely very costly to upgrade existing facilities tomeet the needs of people living with dementia, Dementia Australia,Dementia Training Australia and Dementia Support Australia proposean approach in which incremental improvements are facilitated overtime. At the same time, we recommend a specific focus on new buildsto ensure that they comply with the existing guidelines relating todementia friendly design and that over time these should form part ofthe building code requirements for building any new residential agedcare facilities.12% of Australian agedcare residents have noaccess to outside areasor gardens (16% only‘sometimes’)Reference: South Australian Health and Medical Research Institute (SAHMRI) (2020)Inside the System: Aged care residents’ perspectives.March 202111
The solution tosector transformationFoundational steps are required to improve information andnavigation processes so that people living with dementia, theirfamilies and carers can obtain a diagnosis and access a broad rangeof support services in an appropriate and timely manner. A keycomponent of achieving this is building the capability of the agedcare workforce in the short term and sustaining it over the mediumto long term. This, alongside the physical environments for new agedcare homes being dementia-friendly, will lead to improved careoutcomes for people impacted by dementia. Dementia Australiawould like to acknowledge Dementia Training Australia and DementiaSupport Australia for their involvement and collaboration on theseimportant initiatives and we look forward to continuing to work withthem, as well as the Federal Government and people impacted bydementia to ensure their success.We can map this transformative process over a ten-year period,with most of the activity taking place in the first three years.Almost two thirds(63%) of residentialaged care facilitiesreport skill shortages.Regional facilities aremore likely to reportskills shortages.Reference: National Institute of Labour Studies(2017) The aged care workforce 2016.12A roadmap for quality dementia care
Immediate actionIn essence, the elements of the Roadmap that can be rolled out rightnow include:Building workforce capability A revised dementia unit of competency for the Certificate III inIndividual Support. Targeted delivery of Dementia Essentials1 to deliver foundationaldementia education to the workforces in greatest need. Establish and implement a national network of dementiacommunities of practice. Roll out of a comprehensive assessment of current workforcedementia capability to understand where best to target futureeducation in residential care. Roll out advanced dementia education to a range of healthprofessionals across health and aged care. Expansion of the National Dementia Support Program wheregaps exist.Medium term actionAcross the next three years, we can achieve:Dementia support pathways Short-term implementation of a single access point for peopleimpacted by dementia by focusing on back-end infrastructure tomore effectively link people to Dementia Australia and facilitate‘warm’ referrals to and from My Aged Care, NDIS and the CarerGateway. The creation of new social support and peer support programs tocomplement the NDSP.1Dementia Essentials is underpinned by a nationally accredited unit of competency.March 202113
Building workforce capability Roll out of comprehensive assessments of the current workforcedementia capability to understand where best to target futureeducation in home care. Delivery of Certificate IV in Dementia Practice. Start to develop and implement dementia practice leaders in everyaged care organisation. Developing and implementing a national dementia educationstandards framework supported by learning pathways and careerdevelopment.Dementia-friendly design Developing physical design standards and review panel. Implementing approval processes for new-build or renovatedservices that assesses dementia-inclusive design.Long term actionIn the longer term we can achieve:Dementia support pathways A single Dementia Helpline number for dementia information,services and support, that facilitates access to key services suchas Dementia Behaviour Advisory Service and Carer Gateway. Building workforce capability. Ongoing review cycles for dementia education standards andcourses/content. Embedding a network of dementia practice leaders, supportedthrough communities of practice as key features of knowledgetranslation, practice improvement and systemic change. Building the focus on dementia competencies across a range oftertiary education programs for relevant professional groups.Dementia-friendly design Legislative changes to building codes. Ongoing accreditation/quality standard review that focuses on thephysical environment.14A roadmap for quality dementia care
While we have provided a solid vision to improve the quality ofdementia care, changing the culture of aged care will take time.Ongoing actions such as re-auditing services, embedding continuousimprovement processes specific to dementia, transforming theregulatory environment of aged care services, as well as changinglegislative and policy contexts and building education and workforcepathways and communities of practice, are all important componentsof the sector transformation that is needed.The prevalence of dementia in our community continues to growexponentially. Those impacted by dementia across Australia areseeking decisive action to ensure that the outcomes for people livingwith dementia, their families and carers are adequately consideredin the context of more generalised health, disability and aged carereforms, with targeted, translatable action.Investing in initiatives that define the pathway to and throughservices, developing education mechanisms to embed qualitydementia care, focusing on the impact of the physical environmentand capturing the reform actions in a Roadmap to Quality DementiaCare will demonstrate that the Federal Government is serious aboutmaking dementia core business in Australia.March 202115
16A roadmap for quality dementia care
About Dementia AustraliaDementia Australia is the source of trusted information, educationand services for the estimated half a million Australians living withdementia, and the almost 1.6 million people involved in their care.We advocate for positive change and support vital research.We are here to support people impacted by dementia, and to enablethem to live as well as possible. Founded by carers more than 35years ago, today we are the national peak body for people living withdementia, their families and carers.We involve people impacted by dementia and their experiences in ouractivities and decision-making, to make sure we are representativeof the diverse range of dementia experiences. We amplify the voicesof people impacted by dementia through advocating and sharingstories to help inform and inspire others.No matter how you are impacted by dementia or who you are,we are here for you.March 202117
National Dementia Helpline1800 100 500For language assistancecall 131 450Find us onlinedementia.org.auThe National Dementia Helpline is funded by the Australian Government Dementia Australia 2021, 21034, March 2021
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